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What happens after treatment for Hodgkin disease?

For many people with Hodgkin disease, treatment can cure the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the lymphoma coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.

For some people, Hodgkin disease may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep it under control for as long as possible and to help relieve symptoms from it. Learning to live with Hodgkin disease as more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty. See When Cancer Doesn’t Go Away for more about this.

Follow-up care

If you (or your child) have completed treatment, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments. Follow-up care will be needed for many years after treatment for Hodgkin disease.

During these visits, the doctor will ask about symptoms, do physical exams, and may order blood tests or imaging tests such as CT scans or chest x-rays. Doctor visits and tests are usually recommended every few months for the first several years after treatment. Gradually, the length of time between visits can be increased, but even after 5 years they should be done at least yearly.

Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions and to discuss any concerns you might have.

If Hodgkin disease does come back at some point, further treatment will depend on what treatments you’ve had before, how long it’s been since treatment, and your health. For more information, see “Recurrent or relapsed Hodgkin disease” in “Treatment options by stage.” For more general information on dealing with a recurrence, see When Your Cancer Comes Back: Cancer Recurrence.

Watching for late and long-term side effects

Each type of treatment for Hodgkin disease has side effects that could last for months or longer, or that might not show up until long after treatment has ended. Some side effects, like loss of fertility (ability to have children), could be permanent. Because so many people are now living for a long time after their treatment, watching for these late and long-lasting side effects is very important. Be sure to discuss what these possible effects might be with your (child’s) medical team so you know what to watch for and report to the doctor.

Second cancers: One uncommon but very serious side effect of Hodgkin disease treatment is developing a second type of cancer later on. People who have had Hodgkin disease have an increased risk for several types of cancer. This is discussed in “Can I get another cancer after having Hodgkin disease?”

Fertility issues: A possible long-term effect of chemotherapy and radiation therapy, especially in younger patients, is reduced or lost fertility. For example, some chemo drugs can affect a male’s ability to make sperm, which might be temporary or permanent. If the patient is old enough and is going to get drugs that can affect fertility, sperm banking should be considered before chemo is started.

Likewise, women may stop having menstrual periods with chemotherapy. This may or may not return to normal. Radiation to the lower abdomen can cause infertility unless the ovaries are surgically moved outside the radiation field beforehand. Moving the ovaries does not affect cure rates because Hodgkin disease almost never spreads to the ovaries.

Infections: For unknown reasons, the immune system of people with Hodgkin disease does not work properly. Treatments such as chemotherapy, and radiation or surgery to treat an enlarged spleen (splenectomy) can add to this problem. Splenectomy was once commonly done but is now rare for people with Hodgkin disease. Patients who have their spleen removed should get vaccinated against certain bacteria.

All people who have had Hodgkin disease should keep up with their flu shots. Keeping up with vaccinations and careful, prompt treatment of infections are very important.

Thyroid problems: Radiation therapy to the chest or neck to treat Hodgkin disease might affect the thyroid gland, causing it to make less thyroid hormone. People with this condition, known as hypothyroidism, may need to take thyroid medicine daily. People who got radiation to the neck or upper chest should have their thyroid function checked with blood tests at least yearly.

Heart disease and strokes: People who have had radiation to the chest have a higher risk of heart disease and heart attacks. This has become less of a problem with more modern radiation techniques, but it’s important to do what you can to help lower your risk, such as not smoking, staying at a healthy weight, being active, and eating a healthy diet. Some chemo drugs such as doxorubicin (Adriamycin) and mitoxantrone can also cause heart damage. Your doctor might want to check your heart function several years after your treatment.

Radiation to the neck increases the chance of stroke because it can damage the blood vessels in the neck that supply the brain. Smoking and high blood pressure also increase the risk of stroke. Once again, it’s important to avoid smoking. It’s also important to have regular check-ups with your doctor and to get treated if you have high blood pressure.

Lung damage: The chemo drug bleomycin can damage the lungs, as can radiation therapy to the chest. This can lead to problems such as shortness of breath, which might not show up until years after treatment. Smoking can also seriously damage the lungs, so it’s important that people who have had these treatments do not smoke.

Special concerns in childhood Hodgkin disease survivors

Just as the treatment of childhood Hodgkin disease requires a very specialized approach, so does follow-up and monitoring for late effects of treatment. Careful follow-up after treatment is very important. The earlier problems are found, the more likely it is they can be treated effectively.

Along with physical side effects (including those listed above), survivors of childhood cancer may have emotional or psychological issues. They also may have some problems with normal functioning and school work. These can often be addressed with support and encouragement. Doctors and other members of the health care team can also often recommend special support programs and services to help children after cancer treatment.

To help increase awareness of late effects and improve follow-up care for childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what types of health screening should be done, and how late effects may be treated.

It is very important to discuss possible long-term complications with your child’s health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free on the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines are available (as “Health Links”) on the site as well, but we urge you to discuss them with a doctor.

Seeing a new doctor

At some point after treatment, you (or your child) may be seeing a new doctor who does not know anything about your (child’s) medical history. It is important that you be able to give the new doctor the details of the diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy (and always keep copies for yourself):

The names and contact information of the doctors who treated your cancer

A copy of your pathology report(s) from any biopsies or surgeries

Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored digitally (on a DVD, etc.)

If you had surgery, a copy of your operative report(s)

If you stayed in the hospital, a copy of the discharge summary that the doctor prepared when you were sent home

If you had chemotherapy or other drug treatments, a list of the drugs, drug doses, and when you took them

If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given.

It is also very important to keep your health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.